Chopsticks and capacity-building in Chengdu

Chengdu – capital of Sichuan province in south west China, home of the giant pandas, and the city closest to the 2008 earthquake which killed nearly 70,000 and saw harrowing scenes of school buildings collapsed on children.

Chengdu was our destination on Sunday 5 January, the latest stop on our nine-day visit to China. MS International Federation’s head of capacity building Zoe Burr and I were there to meet organisations and people who can help us achieve the MS International Federation ‘s goal to set up a local organisation to support people with MS in this expansive country.

China is home to an estimated 21,000 people with MS, though the true number is likely to be much higher. For example, if we apply the rates of MS in Taiwan to the total Chinese population, the estimated number is closer to 40,000. There is also an unknown number of people living with Neuromyelitis Optica (NMO), a neurological condition that can be confused with MS.

Blinded

Zoe and I were due in Shanghai the next day, so after checking into our hotel we headed to our first meeting – lunch!

We were joined by three people with MS and NMO. The first, a 28-year-old mum, had travelled for over ten hours by train and bus to join us, the first foreigners she had met.

We were also joined by a young man, blinded by his condition but far from incapacitated – with MS International Federation funding, he has edited and produced two magazines for people with MS in China. He told us excitedly that he recently had an article on Nelson Mandela accepted by a Hong Kong newspaper.

Last but not least, a 32-year-old pediatric nurse with MS ordered our food as we settled into conversation with the help of our China consultant and translator Daniel.

Hardship

Though their general health and condition was good compared to most people living with MS in China, our companions spoke of extreme social and financial hardship during diagnosis and relapse as well as the pressure of supporting their parents financially, discrimination at work, and the stress that MS can bring to a marriage.

Their stories revealed a lack of treatment options, psychosocial support and understanding of this condition, shockingly referred to by some in China as ‘the lazy disease’. They all hope for a cure one day but, until then, they simply need a way to make a living, the understanding of other people, and the enjoyment of loving relationships.

As we clashed chopsticks over the bamboo and lotus leaf, I couldn’t help but reflect on how these stories resonated with those I have heard in other parts of the world as part of my work with the MS International Federation.

It was with renewed vigour that I left the restaurant and headed for our next meeting – filled with the certainty that the MS International Federation must continue its work to establish a support organisation for and with these inspirational people, in spite of the challenges of working in a country of this size, and the lack of a voluntary sector tradition.

I may not have had a chance to visit those giant pandas but I think I had a greater experience. Together with people with MS and MS organisations around the world, we stand in solidarity with people with MS in China, just as the giant panda represents peace and friendship.